Does anyone else have CMML?

On Jun 29, 2012 9:22 PM ekaelp wrote:

Hi Junie,

I was diagnosed a little over two years ago with CMML. I was only 51 at the time and had been sick for several years prior to being diagnosed. They tested me for everything. When they did finally come up with the diagnosis, I did not want to believe it and went and got a 2nd opinion at Fred Hutchingsons in Seattle and then when I still couldn't accept that, and the prognosis, I went to L.A. at Cedar's Sinai. Same diagnosis. So they all agreed and I started on Vidaza chemotherapy which lasted for 6 months. It was painful and made me sick. The upside of it is that my leukemia has stableized and as the Dr. said is "smoldering". He told me that it can flare up at any time and then go back to the smoldering stage again. As with you the Drs. told me to watch and wait. Blood tests are run regularly by my PCP and they will monitor my counts for any major changes. My monocytes at the last test were runing in the upper 20's. Like you, I go from anemic to the very low end of normal. Lymphs have also been very low (3 now Drs. are not worried about that)  always in the single digits. My platelets have been good 115,000 currently, and my white counts good. My stamina is low, but I have other health issues that affect me too. I have had a hip replacement and chronic pain to deal with. I do get skin infections often, like every month. Mostly on my face, arms, thighs and buttocks. Lately I have been getting large lumps the size of walnuts deep into the tissue of my inner thigh. Dr. has biposied the other skin infections and they are staph infections. The lumps are like cysts and they may drain, or just gradually keep shrinking until they go away on their own with anti-biotics. He told me that everyone has staph on their skin, but most people's immune system just knocks it right down and keeps it a  level the body can handle easily. He told me not to worry and put me on anti-biotics - AGAIN!

You are right about there not being many people with this type of leukemia. Even Drs. alway ask me you mean "CML" and I have to tell them no, CMML. It seems like no one understands this illness well, because on the outside you may look fine and they alway tell me "Oh you are looking really good" And what diet plan did you use to lose all that weight? I used to weigh 220lbs, now I weigh 170lbs. Even my family members tell me "You don't look like you have cancer"! So I just go along with them all. At least my wife understands, because she has seen me with all my ups and downs and has gone to the Drs. w/me.

Keep in touch and stay positive and remember everyones body reacts differently to CMML, there is no one major symptom, but several and they seem to come out of no where. Pay close attention to your body and how you feel.

Have you had any treatments, considering any or just watch and wait until you need to do something?

Mark P

Hi Mark

You have had so many severe problems and now CMML too.  I too was getting sick and lack of energy for a year and a half before I almost collapsed.  I was on vacation in Kauai in December of 2009 and went into the hospital and was diagnosed with leukemia.  Came home and my doc diagnosed me with CMML.  I was totally surprised too, but knew my dx was correct.  It was a relief to know what was going on in my bod.  My spleen was swollen and very painful and a temp of 103F.

I was 71 then and have been on Vidaza since Dec. '09.  It seems to be really working for me.  My lab values are very good.  Platelets go up and down, but my doc isn't too worried about this.   You mentioned that Vidaza was painful and made you  very sick.  I learned early on that the injections were painful and didn't receive any med to keep me from having emesis about 3 hours after.  I get Vidaza IV every month x 5 days and take Ganisetron 1 mg before my infusion.  This is my magic bullet.  I have forgotten once to take the Ganisetron and whoa, I was sick in a few hours.

Sorry this is so long Mark.  Just keep up your good spirits.

Della

I have infusions when my platelets get low. Fortionately I have not had an infusion since last August. I hope you are doing well. Jackie

Della, I have not tried salmon oil. That is new to me, I will have to check into it. Thanks, Jackie

On Jun 29, 2012 9:22 PM ekaelp wrote:

Hi Junie,

I was diagnosed a little over two years ago with CMML. I was only 51 at the time and had been sick for several years prior to being diagnosed. They tested me for everything. When they did finally come up with the diagnosis, I did not want to believe it and went and got a 2nd opinion at Fred Hutchingsons in Seattle and then when I still couldn't accept that, and the prognosis, I went to L.A. at Cedar's Sinai. Same diagnosis. So they all agreed and I started on Vidaza chemotherapy which lasted for 6 months. It was painful and made me sick. The upside of it is that my leukemia has stableized and as the Dr. said is "smoldering". He told me that it can flare up at any time and then go back to the smoldering stage again. As with you the Drs. told me to watch and wait. Blood tests are run regularly by my PCP and they will monitor my counts for any major changes. My monocytes at the last test were runing in the upper 20's. Like you, I go from anemic to the very low end of normal. Lymphs have also been very low (3 now Drs. are not worried about that)  always in the single digits. My platelets have been good 115,000 currently, and my white counts good. My stamina is low, but I have other health issues that affect me too. I have had a hip replacement and chronic pain to deal with. I do get skin infections often, like every month. Mostly on my face, arms, thighs and buttocks. Lately I have been getting large lumps the size of walnuts deep into the tissue of my inner thigh. Dr. has biposied the other skin infections and they are staph infections. The lumps are like cysts and they may drain, or just gradually keep shrinking until they go away on their own with anti-biotics. He told me that everyone has staph on their skin, but most people's immune system just knocks it right down and keeps it a  level the body can handle easily. He told me not to worry and put me on anti-biotics - AGAIN!

You are right about there not being many people with this type of leukemia. Even Drs. alway ask me you mean "CML" and I have to tell them no, CMML. It seems like no one understands this illness well, because on the outside you may look fine and they alway tell me "Oh you are looking really good" And what diet plan did you use to lose all that weight? I used to weigh 220lbs, now I weigh 170lbs. Even my family members tell me "You don't look like you have cancer"! So I just go along with them all. At least my wife understands, because she has seen me with all my ups and downs and has gone to the Drs. w/me.

Keep in touch and stay positive and remember everyones body reacts differently to CMML, there is no one major symptom, but several and they seem to come out of no where. Pay close attention to your body and how you feel.

Have you had any treatments, considering any or just watch and wait until you need to do something?

Mark P

Hi, Mark:  I just today read your reply (not too computer savvy).  Thanks for the info.  I feel fairly good, except for fatigue sometimes.  Luckily, I'm very physically active, and I think that helps.  Lately, I've started biking with a friend.  Sitting down on a bike and getting out in nature re-energizes me no matter how tired I feel.

Here's something interesting.  The other lady in my group with CMML had some good news last month.  Her white blood cells started going down and the docs were concerned she was going into acute leukemia; however, after another bone marrow test, she now has (I believe) AML -- I guess that's one step better than the CMML.  She's been in treatment for a couple years - I don't know name of drug - will find out, but she's doing well.  I asked my local hematologist if he knew of anyone who was "cured" of CMML.  Surprisingly, he said a woman who was treated for breast cancer actually was "cured" after chemo.  Go figure.

I still have not started treatment - my white blood cells are around 32,000 right now and going up  What about you?

June

Hi all

I was diagnosed with cmml 2 1/2 years ago.  I begin my 18th round of chemo monday.  My main complaits are fatigue and bone pain.  So far the vidaza continues to keep the disease under control.  I just had a serious infection in my port and had to have it removed.  A bout of antibiotics cleared it up.  It was a wake up call for me.  The infected area went from the size of a quarter to 8 x 12 inches in a day and a half. I realize, again, how quickly things can get out of control.

Keep a cheerful attitude.  It helps a lot.  Bonnie

Hi Wendy.

Ihave tried to send you a message a couple of times, and in one instance I understand you tried to answer the message. In any event CancerCompass has indicated that I have a response, but can not find it.

Interested in more discussions with you,

Bill Z

Hi. We are in such a small club. I am a 63 y/o granny and ave been diagnosed with CMML for 6 years. No treatment, just watchful waiting. Very grateful to not be worse, but I wish there was more info out there. Hard to know what to expect. My symptoms are much the same as everyone here. Fatigue s the worst. Infections can quickly go from a little blister on the heel to a fat foot.i sweat buckets. Everyone says I look great. Just a puzzling disease. I too sometimes have deep bone pain. I am able to enjoy the grand kids . Pacing myself for doing what is the most fun. laughing often and loudly! Mary Carol

So sorry not to have replied - didn't recognize replies on computer - and just deleted them.  Not tech savvy!  It seems that CMML is basically treated as a chronic disease and you just hope for the best, but I guess that's better than some cancers.  I am not being treated yet - I was recently hospitalized for supposedly a gallbladder attack and may need it removed.  My hematologist thinks so to avoid an emergency situation, but it's not clear-cut.  My WBC's went up to 63+ in the hospital but are now back down to 33.  Whew!  Spike obviously related to whatever was ailing me.  My lymphocytes are 8.4, mono's 6.1 and RBC's slightly low - platelets still normal.  So I am not yet in treatment; however, going to a GREAT Lymphoma/Leukemia group at The Wellness Center, a cancer support organization.  It's amazing how much many of these patients know.  I strongly encourage joining a group even if your head is in a good place as mine is - there's so much you can learn and even give back.  I've always been very active, but I notice my stamina in kickboxing, etc. is not as good so I've taken up biking.  It seems to me I don't get quite as tired in the afternoons as I used to (practically nodding off by 3:00).  Right now I am researching docs - there's good one at CIT at Robt. Wood Johnson in New Brunwick.  Another CMML patient went to this doc.  Something extraordinary happened to her - she no longer has CMML but now has another blood disorder; unfortunately she feels really ill with this new problem and almost wishes she had her CMML back!  Such a weird disease and not enough known about it.

Keep well, keep the faith, and keep in touch.

June (Juniemoots)

Hi, Mary Carol:  I do not have the same symptoms - fatigue which I try to keep at bay by exercising.  I get these huge, weird bruises.  Last week I feel on my left side with my bike and I now have a hematoma about a foot long and 7" wide with a huge lump on my thigh running from bottom of my hip down my thigh.  This is not the first time something like this has happened - I have had my whole lower leg bruised by just falling on my knee/shin, on my arm falling against the fridge and just getting a flu shot!  I do not sweat, although the doc asks me every time and I do have an enlarged spleen and liver.  Everyone tells me how great I look, too; in fact, I've recently lost 6 lbs. due to gallbladder? problems.  You sound so positive!  I, too, do not dwell on the negatives, and have supportive siblings with who I laugh a lot.  Yoga, which I've been practicing for 12 years, definitely helps, as well as my faith.  I strongly advise people to practice yoga - there's something for everyone and every level and it's not competitive.  It helps you mind as well as your body.  Your 6-year w/no treatment makes me hopeful, although my WBC's have doubled in the last year.  I am hopeful they will stabilize.  Keep the faith! and keep laughing!

All the best to you,

June

Hi, Mary Carol:  I do not have the same symptoms - fatigue which I try to keep at bay by exercising.  I get these huge, weird bruises.  Last week I feel on my left side with my bike and I now have a hematoma about a foot long and 7" wide with a huge lump on my thigh running from bottom of my hip down my thigh.  This is not the first time something like this has happened - I have had my whole lower leg bruised by just falling on my knee/shin, on my arm falling against the fridge and just getting a flu shot!  I do not sweat, although the doc asks me every time and I do have an enlarged spleen and liver.  Everyone tells me how great I look, too; in fact, I've recently lost 6 lbs. due to gallbladder? problems.  You sound so positive!  I, too, do not dwell on the negatives, and have supportive siblings with who I laugh a lot.  Yoga, which I've been practicing for 12 years, definitely helps, as well as my faith.  I strongly advise people to practice yoga - there's something for everyone and every level and it's not competitive.  It helps you mind as well as your body.  Your 6-year w/no treatment makes me hopeful, although my WBC's have doubled in the last year.  I am hopeful they will stabilize.  Keep the faith! and keep laughing!

All the best to you,

June